Today is World Diabetes Awareness Day, so I thought I’d share my story. When I was a kid it was “a shame” because I was “so young”. As I grew older it was less tragic and more inconvenient. Diabetes had become so widespread by the time I was an adult that it was not only common but relegated to “nuisance” status by those who had never encountered it firsthand. When I wasn’t being lectured about my diet and lifestyle choices I was being sold ridiculous ideas about treatments and cures that would eliminate my dependency on insulin, from fad diets to a very specific routine that involved drinking hydrogen peroxide. Diabetes became an urban legend that crept into as many conversations as it could. Everyone had an aunt or a friend who had diabetes “real bad” and suffered immeasurably because of their own sad shortcomings. Everybody knew somebody, but nobody really knew much about Diabetes itself. I’m not here to educate. Most people who actually want to know anything about this disease will do some reading. It’s out there. I’m here to tell you what they don’t tell you in books. What happens to your life while Diabetes is doing what it does to your body.

By the time I was diagnosed at age 9 my mom had been a diabetic for over 15 years. As a kid she was given a pretty short expiration date, and how we dealt with diabetes in children was dismal and rare. We knew very few details about how blood sugar and body chemistry worked and even less about how systems in the body interact. We were shooting blind, and we were losing. My mom lost her sight just before I was born, and people had the nerve to condemn her for keeping the pregnancy that would do such a thing. Instead of giving up, she persevered. She learned braille, learned to take care of a newborn, and would eventually go one to be an advocate for people with disabilities and an education facilitator for other blind people.

For me there were few options when it came to routine, but my Diabetes was much different from my mother’s Diabetes. We were beginning to count carbs and categorize food. We knew that there were things other than food and exercise that affected one’s blood sugar, we just didn’t yet have a system for managing Diabetes that took into account a child’s changing body, other conditions, or fluctuating schedule. Instead we were heavily restricted and chastised for not being perfectly regimented. I went to camp for a few summers, but I came home in almost worse shape than I was beforehand. I made some good friends, but they all seemed to be getting it, and I just wasn’t. Around the time I began to take a dedicated interest in my own health I was patronized and treated like I was stupid, so I stopped caring for a long time. If no one was going to help me I certainly wasn’t going to waste any more effort with something that wasn’t working.

Right before my thirteenth birthday my mom died of complications from her Diabetes. The curse that had loomed over her since childhood had given her twice as long as she’d been promised. For me it meant the one person who understood my frustration when I felt like I just couldn’t get it right was gone, and my teenage year were full of doctors and educators and adults telling me why they thought I was failing. I was lectured instead of taught. I was reprimanded instead of being listened to. I felt like giving up. To this day I will walk out of a doctor’s office and never return the moment my mother’s life and death is used to scare me to health. Did I see what it did to her? Of course I did. Does it help to hold it in my face like a death sentence? Never, and I won’t tolerate it.

By the time I left for college I was floundering. I had researched newer insulins and better routines, but my medical team refused. My driving privileges had been revoked because that same team told the California DMV that I showed nothing but disregard for my own health and safety, and to this day I don’t have a driver’s license. Then I lost my health insurance. Say what you want about the Affordable Care Act, but I know what it’s like to dodge colds like the plague hoping you don’t end up in the hospital. I know what it’s like to get insulin in the mail. I know what it’s like to consider every ridiculous idea that comes to you, because I couldn’t even pay for my own health insurance with a pre-existing condition and the state wouldn’t give me any unless I was homeless and pregnant.

I was lucky to find a job with reasonable health care benefits. I was even more lucky to finally find an endocrinologist who would listen and work with me. Because of her I learned about inflammatory disorders, autoimmune issues, and insulin resistance. Because of her I found something that made me feel like maybe I wasn’t just waiting to die.

When I met my husband he had an insulin pump but little else by way of education. Having been diagnosed as an adult, he had been forced to put himself int he hospital before his doctors would even consider the idea that he might need insulin, a pretty common situation adults with Type 1 find themselves stuck in. In helping him I began to re-educate myself, and therein started my pump journey. It hasn’t made me perfect, but it has enriched my life exponentially. A few years later I would add a CGM, and it’s like a whole new life.

About six years ago my stepson, who was 2 at the time, was diagnosed, and his Diabetes gives me hope that he won’t have the childhood I did. While it won’t be easy for him, we have tried to make it just another thing that he does, not something he HAS to do that will breed resentment. While I know he will have his phases, his ups and downs, and his failures, we are trying to instill in him an open dialogue atmosphere as two adults who know what it’s like to try your hardest and still have a bad day or not try your hardest because you’re human and pull yourself back from it.

So here’s what the books don’t tell you about Diabetes:

1. Diabetes doesn’t ever come alone. It comes with a litany of other autoimmune and inflammatory diseases. Your blood sugar affects anything from your muscles to brain chemistry. Diabetics are prone to depression, vitamin deficiency, fibromyalgia, JRA, thyroid disease, heart disease, eye disease…you get the picture. We are constantly watching, constantly wondering, and constantly being brushed off by the medical world, because everything wrong with us is attributed to diabetes. Everything.

2. Diabetes never takes a day off. This should seem very obvious, but it’s not. There are some days you just don’t feel like counting as closely or planning the next 4,000 steps of your day. Much like a “cheating on my diet day” there are some days where you just accept that you’re going to feel like crap tomorrow and go to the Chinese Buffet. Believe it or not, it’s ok to be human.

3.Disclosure about Diabetes can sometimes be worse than coming out as queer. Believe me. I’d rather explain my girlfriend sometimes than my insulin pump.

4. Diabetes is expensive, even with prescription coverage. Co-pays, vitamins, and testing and pump supplies, even at 80%, are very expensive.

5. Diabetes means a lot of math and psychic ability. Seriously.

6. No one knows. Let me repeat that: No one knows. I could have all the complications. I could have none of the complications. I could have them completely aside from Diabetes. Things could be related that haven’t even been linked yet. No one knows, and I refuse to live my life concerned about hypotheses.

SO, today is Diabetes Awareness day. I don’t think there’s anyone who can read this who isn’t aware that Diabetes exists, but sometimes that awareness comes in the form of an obsolete pamphlet written in 1989. Hell, my work manual still uses the phrase “insulin reaction” to describe hypoglycemia. As we’ve picked up the cause for more fashionable diseases, Diabetes has become old hat to those who don’t live it every day, but it’s still costing us. It cost me my mother. It could someday cost me my husband and the only child I have, because it’s already cost me much hope of having children of my own. It cost me the freedom of a license for many years and the peace of mind to know I can change careers or start my own business. It cost my husband his military career. It cost my mom her sight and a huge chunk of her life. These are things no amount of logs or checkups can bring back.

Diabetes Awareness Day….for me it’s every day, but it’s no longer the Diabetes that it was 21 years ago. My hope for my stepson grows stronger every day, but it is defendant on us not forgetting that these forward steps don’t mean we’re on the easy road yet. We’ve still got a journey ahead of us. We’ve still got stories to tell.

Disclaimer: I debated writing this today. I’m in a pretty thick fibro fog, which makes organized thought a rough task. I haven’t written much lately due to a quick but necessary move and a short stint in the hospital, so I decided to take a chance. Forgive the slight leaps and jumps. This was important.

As far as I am concerned, we live in a time and place where medical science is at least slightly more than trial and error when it comes to diabetes, that is, unless the patient happens to need hospitalization. The problem is not lack of knowledge, it is lack of education on the part of most doctors and nurses.

When I first met my current Internal Medicine doctor she admitted she lacked specific knowledge on diabetes and referred me to an endocrinologist for anything diabetes related. This seems to be a general condition of doctors treating patients in any hospital across America, and believe me, I have been in enough of them to know. In the past I have had hospitals take me in then refuse me insulin until my blood sugar was high enough to need substantial correction. When I protested that I did not enter the hospital with high numbers and that their methods were less than logical, the nurse said to me, “I know, my boyfriend is a diabetic, and that’s how he does it too.” No, honey, that’s how every diabetic on the planet does it. Only when I refused to eat until I was medicated or allowed to speak to a doctor was I given anything. The doctor told me the policy was based on the unlikely possibility that I would crash in my sleep and never recover. Even unconscious you can fix a low blood sugar in a hospital, and it would have taken a lot more than what I needed to put me in that position.

On a recent trip for a viral infection I resorted to hoarding juice and sneaking in my own testing supplies to self-treat. Let me assure you, this is no easy task when one is half conscious from a stomach bug. Still, if I had not taken my own measures I would have not been able to fix an extreme low that was ignored for almost an hour. We cannot let this kind of situation exist. How many patients have not healed or been kept in hospitals for extended stays because their diabetes is not being properly managed by the people charged with caring for them? Then to have them tell me I need to just trust the professionals who have time and again left me in worse condition than when I started because they have the big fancy titles, degrees, and several years of overpriced education is ludicrous. Prove to me you really deserve my faith and you will get it. Deny me insulin based on some protocol based in fear of far-fetched risks and you will not.

I really have no idea how to solve the problem, I just think it needs to be brought to the attention of anyone and everyone who will listen. Diabetes may be ever evolving as far as treatments and care, but the basics have not changed. It is imperative that hospitals start paying attention and educating their staff. I am tired of being approached like a bad child and lectured like I have no clue how to take care of a condition I have had for almost two decades by people who keep making me sick. Does this make any sense to you, my friends? Do you have any similar stories to tell? Maybe we can gather them up and send them to somebody who can do something. I fear, more than likely, that person doesn’t exist and we will have to make our own change. Either that, or start hoarding those little juice cups that come with breakfast.

I got the inspiration to start researching the GFCF (gluten free casein free) diet from Jenny McCarthy of all people. I had finally picked up a copy of Mommy Warriors and sped through it on my way to Delaware a few weeks ago. It amazed me how closely the physical ailments kids with autism resemble those experienced by diabetics. If the diet helped them recover, in some cases almost completely, I wondered how it could help me, Hubby, and my stepson. We all have diabetes in different stages of evolution, the baby especially. At this time he’s in a honeymoon period, which means occasionally his pancreas still produces insulin. It struck me that this diet might prevent further damage of the beta cells that are responsible for insulin production. What I found after a few rounds of Google-tag was amazing. Why was it, in the seventeen years I have been a diabetic, that none of this information had been given to me?

My first search centered around the link between diabetes and autism, which is closer than one may think. Many children diagnosed with autism will eventually be diagnosed with diabetes, as both are now identified as autoimmune affective disorders. Research has shown that this continues to be the rule, not the exception. What concerns me more is the rate at which the number of cases where this is not the case is falling. Something has to be done, but how?

I continued my search with the effects of gluten and dairy on diabetics. I had never imagined I would find more results than I could read in a day. As I sifted through the various articles and holistic healing sites, I was certain that this is something we needed to consider, and soon. Not only are most diabetics gluten sensitive, there is evidence that most diabetics have a weakened ability to breakdown grain and gluten, causing damage to the digestive tract. Further sensitivity is often caused by casein, which is found in the milk of A1 cows, which is also attributed to “leaky gut” and the initial cell damage that causes diabetes. There is only one dairy in the United States that does not use these cows. All of these factors combine to support a theory proposed to me by my high priestess, who feels I may not be absorbing most of the vitamins and nutrients from the food I eat, which would definitely cause a majority, if not all, of the symptoms I have experienced since last year.

My final search centered around vitamins and herbs. We already prescribe to a hearty collection of herbs, but all we take in terms of supplements is a multivitamin. Maybe, I thought, if my high priestess’ theory was correct, I needed higher dosages given in intervals instead of all at once in a multivitamin. There is no supplemental panacea, but what I found was a cocktail of several vitamins, enzymes, and probiotics at multiple intervals to aid nerve function, glucose tolerance, and carbohydrate metabolism.

Now that I have all this information I am in the process of learning how to properly use it. Hubby seems onboard with switching to soy milk for him, almond milk for me due to a severe estrogen sensitivity, and gluten flour in the breads and cakes I make. It won’t be an easy change, but in the end I think it will make a huge difference in our health and better role models for not only my stepson but for the other children we eventually add to our family.

I am determined to do more than sit here and let my condition rule me, and I can not sit and wait for the health system to figure out what to call it. If this helps, we will all benefit. I will finally be able to go back to work, and we will be able to get on with our lives, continue to build our home together, and eventually start a family. I will do whatever it takes to get back to normal, and you, dear readers, will be kept up to date on the progress to share my path to new health every step of the way!